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  • #1

    Severe Pfd Pain...help

    omg i feel like i'm DYING...i had a bladder instill yest. which didn't help.

    the pelvic pain is BEYOND BELIEF. i'm having a hard time going potty...hurts like u know what. problem is, i can't take most pain meds...they cause retention and mine's already severe at times . what to do?? i really need help here b/c i'm spasming (bladder), my back hurts, pelvic area is insane with pain. i've been in pt for awhile but lately i notice i'm not doing my kegels as strong...and trying to do them seems to make me hurt worse. i just got approved for an e-stim machine and am waiting for it.

    any suggestions, PLEASE?? i'm trying not to cry. i have to go for a full mri (broken into 2 days as it's brain, and 3 for the back...and i'm sooooooo claustrophobic) next week so maybe the stress and worry isn't helping. my dr. is considering the fact that i may have ms. but i need relief now. i don't know if i should take a soma b/c it can cause constipation (i use a lot of fiber and drink a ton of water but sometimes it still hurts) or consider trying the flomax again?? i'm at the end of my rope here.

    any suggestions are appreciated. thanks,
    tracy
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:


    Connor with Santa...so happy!


    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!
    Tags: None
  • #2
    I do know that kegals cause my bladder to go into spasms... They are very bad for me...Have you tried soaking in a hot bath.. Also I know if you can get those muscles under your butt area worked on it helps alot... I have my husband rubb them for me.. Also maybe I am wrong but to my understanding Kegals tightens the muscles so that could cause retention to...I wish I had better answers maybe someone else will chime in and help....
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment

    • #3
      the catch-22 is that i have moderate prolapse (rectocele/cystocele)...so i have to kegel. but my pelvic muscles are also very tight and painful which i understand kegels are NOT good for. i'm hoping the e-stim will help. has anyone used it?

      i just took a soma with some extra fiber...i'm hoping that will ease the pain and relax me somewhat so i can finish peeing all that's in my bladder. CATHING would be the WORST thing rite now.

      i've been rubbing my butt and had my husband do it a bit (but now, he says, he doesn't want to...telling him WHY i need it done takes the romance out of it lol ) tried the hot bath...a little help.

      anyone with estim experience...has it helped? anyone who's taken soma...has THAT helped? i've mainly only used it for sleep. thanks.
      (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

      Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

      I'd like to be on House, MD as a medical mystery.

      Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

      Connor & Mommy by the tree:


      Connor with Santa...so happy!


      I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

      Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

      I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

      Comment

      • #4
        I know surgery is a last resort, but can't they correct that with a sling? In your case it seems like it could be worth while. You are suffering so badly.

        Erika
        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control

        Comment

        • #5
          i have been considering surgery. it would be nice to poop w/o sticking my finger into my vagina (sorry tmi).

          erika, what do you do for your pfd? i have an INSANELY high resting tone.

          thanks.
          (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

          Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

          I'd like to be on House, MD as a medical mystery.

          Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

          Connor & Mommy by the tree:


          Connor with Santa...so happy!


          I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

          Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

          I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

          Comment

          • #6
            It does sound to me like stress might be playing a least a small role. I know it really does for me, especially medical stress!
            I keep hearing that when you have a high muscle tone you should not be doing kegels but they are a HUGE part of my success as of late. I started off at 6.4 and now I'm down to 1.8, so I'd question that rule of thumb...

            verdicries, I'm sorry you're having such a hard time. When I'm having a lot of pain from spasms I get a lot of benefit from REALLY focusing on relaxing my pelvic floor (of course), exercising, stretching, and really massaging my lower back, butt, inner thighs and the area of my PF muscles. That and a heating pad usually help a little.
            I hope you feel better soon!
            Diagnosed with IC: October 2006

            Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

            Treatment:
            Lots of water
            Fiber, when I can remember...
            Elmiron (I'm down to 200mg per day)
            Kegels (10 sets of 10 second holds per day)
            Yoga and Pilates, each weekly
            Exercise 3x weekly

            Have tried:
            PT for PFD and chronic back pain (VERY helpful)
            IC diet (I'm not diet-sensitive while on Elmiron)

            Comment

            • #7
              what kind of exercises do you do in pt for your pfd? i will try the heating pad (just have to FIND it...lol). thanks. the soma has basically worn off (only lasts about an hour for me. boo), grrrrrrrrrrrrr. i wonder why it doesn't last for me?

              thanks everyone.
              (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

              Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

              I'd like to be on House, MD as a medical mystery.

              Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

              Connor & Mommy by the tree:


              Connor with Santa...so happy!


              I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

              Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

              I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

              Comment

              • #8
                Do you have any muscle relaxers. If so, try that, also my URO said if I need to use the stool softners when needed. They work for me. Also, I will post this somewhere else, I was in Chattanooga standing in line getting tickets for the aquarium and I began a conversation with a woman in waiting also, well, long story short, her husband is a nurse and works for a new company that has come up with a product that they use for bladder slings and such that actually will turn into your own tissue after time. She was from Alabama but went to Emory in Atlanta to have the surgery, this was 3 weeks before her vacation, she said she was so great, never felt better. Her husband was actually in Chatt. to help in a surgery. I have her email and the product name if you or anyone else wants it, just pm me. Hope all goes well.

                Comment

                • #9
                  Verdicries - I have severe PFD, I'm flaring, but it sounds like it's worse for you right now. I've tried PT, massage therapy, acupuncture and trigger point injections - and nothing's worked. In fact, it's made it worse. Right now I'm taking Valium during the day and a Soma at night after I soak. The Soma seems to be working better than any other muscle relaxer. I've been soaking twice a day, because it feels like my bladder is going to fall out. My back, right leg and hip ache all day and occasionally have to take oxycodone for pain. What helped the other day was to break the Soma into four parts and then take a quarter every two hours. Perhaps your doc will give you something stronger so you can function or at least sleep.
                  Hope you feel better soon.
                  Stephanie

                  Comment

                  • #10
                    Originally posted by verdicries View Post
                    what kind of exercises do you do in pt for your pfd?
                    The only exercises I do specifically for PFD are the 5 minutes of kegels a day. For general muscle tension (I seem to hold ALL my stress in my muscles, which is bad cause I'm a very tense person already! ) I walk for 20-30 minutes a day and then some days I meditate for 10 minutes and then lay down and concentrate on tensing and then relaxing ALL my muscles until I feel like goo. I figure if the rest of my body is tense, how could I possibly try to keep my PFD muscles relaxed???

                    Good luck!

                    ps. I don't usually have any food sensitivities for IC, but man.... I've been drinking a lot of beer lately (instead of my usual red wine) and my bladder feels like its being stabbed with a pen! No more beer for me for a while!
                    Diagnosed with IC: October 2006

                    Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

                    Treatment:
                    Lots of water
                    Fiber, when I can remember...
                    Elmiron (I'm down to 200mg per day)
                    Kegels (10 sets of 10 second holds per day)
                    Yoga and Pilates, each weekly
                    Exercise 3x weekly

                    Have tried:
                    PT for PFD and chronic back pain (VERY helpful)
                    IC diet (I'm not diet-sensitive while on Elmiron)

                    Comment

                    • #11
                      Dr. Moldwin perscribes 2 mg of valium twice a day for PDF. It really helps. Pain killers do not work for me for PDF but valium does.

                      Ginny

                      Comment

                      • #12
                        The valium doesn't work as well for me. It's almost like eating Skittles. The doc is weaning me off the valium and wants me to try neurontin.
                        Stephanie

                        Comment

                        • #13
                          I have a sling and it was such a huge relief to be able to urinate and empty my bladder. And the surgery wasn't bad at all. I couldn't lift anything for several weeks, but that was the only bad thing.

                          One of the flomax kind of drugs might help too.

                          Donna
                          Stay safe


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                          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.                           [3MG]

                          Anyone who says something is foolproof hasn't met a determined fool

                          Comment

                          • #14
                            hi donna,
                            i'm considering cystocele/rectocele surgery, i just dunno what to do about my son (not picking up stuff...hard w/a baby). also, while the fallen bladder isn't HELPING my bladder emptying situation, the pfd is making it worse i think.

                            flomax scared the crap out of me w/side effects, i took it and well...see my signature. yesterday out of desperation i took it again. nothing seemed to happen! i'll try it again today.

                            *big sigh*

                            thanks for the replies. i'd like to try valium for pfd pain but i know it'll knock me out plus cause more retention (ick). i'm thinking of trilisate, i used that as a kid for fibro. anyone used that? i haven't since i was...hmm...15? i think it helped.

                            happy easter everyone
                            (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                            Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                            I'd like to be on House, MD as a medical mystery.

                            Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                            Connor & Mommy by the tree:


                            Connor with Santa...so happy!


                            I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                            Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                            I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                            Comment

                            • #15
                              neurotonin?

                              wondering what neurotonin is? thanks.
                              (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                              Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                              I'd like to be on House, MD as a medical mystery.

                              Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                              Connor & Mommy by the tree:


                              Connor with Santa...so happy!


                              I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                              Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                              I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                              Comment

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